A blog about Central Pain Syndrome, commonly referrred to as CPS. Written by a patient who has acquired it as the result of a thalamic stroke, it is intended to be a site for discussion of its symptoms, its causes, its horros, its treatments (or lack thereof), and a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

Isolation

The day came and went, and we are all still here, in the exact same spot.

I haven’t written in months, ever since my father’s passing. It was his birthday this week; he would have been 85. It is profoundly sad that he was so isolated at the end, even in his own mind, a man who I knew as an extrovert. He loved working at the pharmacy, because he met people from all walks of life, from the plutocrats like C. Douglas Dillon and Pierre Lorillard, the owner of Lorillard Tobacco, to the delivery guy from the drug stockist, who only spoke Spanish. Ernie learned a bit of Spanish to converse with him. He made us take Spanish as our language in high school, rather than French, because he was convinced that Spanish would be an important language for Americans to know. He was correct, of course; I remember more of my high school Latin than I do of my high school or college Spanish. (Thank you, Sr. Redempta, wherever you are.)

I loved working at the pharmacy, as well, and for the same reason. I, too, have been an extrovert ever since I was a tiny child. My mother relates a story of taking me with her to a ladies’ party when I was three. I went around the room, shaking the hands of all the women and introducing myself. I have always loved getting in front of a crowd and speaking to them, seeing their faces as they moved into my narrative with me.

Now I am isolated, physically and socially. This disease does not. Not having a license does that. Pain and its attendant depressions do that – the pain especially. All of the members of the CPS Alliance speak of this same isolation. That is why the group of us that have incorporated the Central Pain Syndrome Foundation have chosen “You Are Not Alone” as our organization’s motto. Hundreds of times I have seen new members to the CPSA or the CPS FaceBook page say, “I thought I was the only one. I felt so all alone.” Well, they are not alone. There are millions of us.

When it comes down to it,I am not really alone, either. I may not see many people in the flesh, but I am fortunate to live in an age when the internet has permitted communication between people from around the globe. The FaceBook page, in particular, seems to have a very lively and close group of people, who feel emotionally connected to each other. That may be because we have photos next to each post, and can discover facts about the posters by looking at their pages. There are so many opportunities for me to reach out and connect with other people. The problem is that I am often to exhausted to make the effort, and am frequently in too much pain to even answer a phone call.

Part of the isolation is the structure of my day. Upon awakening after seven to eight hours of decent sleep, I have energy, and can actually do intellectual work for approximately four to five hours. That is the period during which I must write, organize, and plan – in every area of my life and responsibilities, These include the CPSF, the CPS FaceBook page, any pertinent responses to the CPSA, our business, our bills, our home, keeping track of my ten prescriptions, and even our menus. Or finances are in poorer health than I am, and that puts me under tremendous stress. I often feel hopeless to accomplish anything, as if I have no definite path to fix things, and that causes even *more* stress. The stress makes the pain flare. The pain makes my blood pressure skyrocket. My body is so tense most of the time that I cannot determine what is the spasticity and what is just the effect of wincing from the anticipated blow of bad fortune. To discover stress is as life-that shortening as smoking five cigarettes a day is stressful in itself!

I am also alone in my home. My husband and my son are both introverts. Jake stays in his room for most of the day, coming down to do chores if I ask him, or to make dinner. Jack stays in his office most of the time, unless he in out of the house at calls, or watching television in the den. I am no long a television watcher; endless shuttling through the cable channels makes me impatient and annoyed. So I sit in the living room every even, playing an MMORPG with a group of people from all across the world. At least half of the people in my group are adult close to my age or older, often disabled. At least two of them also suffer from CPS, although they didn’t know that was the name of their pain. The game distracts me from my body’s increasingly arduous travail, and the online conversation gives the effect of a cheerful “family.” But the upshot is that the three of us really only are together when we eat meals.

What is increasingly obvious is that my husband has almost no romantic feelings towards me anymore. He is loving in that he cares for me in many ways, working at his tasks, running errands, paying for my medications, but my thoughts no longer interest him. Neither does my body. He has no desires for me of any type. Perhaps it is age; perhaps it is proclivity; perhaps it is stress. My body has changed; so has his. Perhaps it is that I, and this marriage, have disappointed him past caring. But the situation of my marriage is a stress in itself. I still love him romantically, and long to be close to him, but those feelings do not seem to be reciprocated.

All of these are the contingencies of life with which I mut deal. There are some things I cannot control, and some that I can. There are steps that I can take to ameliorate my situation; those are the efforts that give a sense of power. The rest, I must learn to accept without ill will.

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Louise – sorry for everything that you posted. I can relate to everything. I live with my mother but I keep to myself in my part of the house, and while she goes to bed at 10pm I go to bed at 3am (med side effects) so it’s very easy to feel lonely. What I do is that I have television in the BACKGROUND all the time while I’m doing things. While I’m on the computer etc…. even while I’m reading. I just turn off the volume while I’m reading. If I don’t i feel incredibly alone. I always keep mentally busy as much as possible

And about your marriage – as couples age they often have reduced sex activities (although not always). Because you spend so much time apart in different rooms you’ve just become friends. Could you do any activites together? Could you play cards one night a week? Or any other game that 2 people can play/……… or do you have another couple you can invite over to play cards for 2 people? Know what I mean?

After I wrote that, Jack and I had a frank discussion about what was happening in our relationship. Well, I talked and asked questions, to which he replied, “I don’t know. It’s just not that important t o me anymore.” I agree with you that there are changes we can make that would improve our time *together*. Asa I was writing, I realized once again the lesson which I must learn over and over: “If it’s to be, it’s up to me.”

But this type of problem isn’t specific to my marriage. I think that *all* marriages which have a partner who has CPS, especially Spinal CPS, must have major changes that occur after the development of the disease. This isn’t a topic that is much discussed, either on the CPS Alliance, or on the FaceBook page, probably because it is so intimate. But that sense of losing a vital part of yourself, and of the relationship, can make the pain and isolation of CPS even more intense. There are no recommendations that I have read about how to have a sexual life when you are suffering from intense, constant [pain. Some of our members cannot bear even the slightest breeze, or the touch of sheets. To add the loss, or considerable loss, of a crucial, vital element of marriage to the depression caused by CPS is a challenge that we never discuss.

Once more, we return to the topic of isolation. Just because we CPS people never talk about it is a mere mask for the fact that it is a problem that we all must share in some way. I looked at my situation and said, “You are not alone.” Hopefully, it is a topic that we can discuss, and perhaps find some comfort and assistance. That is the reason that I posted about it.

Yes, I do know what you mean – and I’m still determined to make more blog entries. I want to discuss as many areas of CPS as possible here, where I have a written record. Perhaps the more posts I write, the more people will read this? That is one of my New Year’s resolutions…at least one entry per week.

Hi – You mention your husband. Even though I don’t suffer from CPS I can certainly imagine that it is, indeed, hell. I would also imagine that being involved with someone who suffers from CPS would be its own type of hell. Are there support groups – not necessarily for CPS specifically – for someone in your husband’s situation? If so, would he be interested in attending such a group? Thank you.

Timothy, Thank you for responding to my post. There are support groups for the partners and caregivers for cancer patients, and for stroke survivors, but there is nothing as such for partners and caregivers of CPS patients. It might be possible to set up some support groups for the partners of people with chronic pain.It’s certainly something that the CPSF could work on once we have gotten our Federal application completed. I’ll put this idea into our Strategic Plan. Thank you for it!

Whether my husband would wish to attend it, however, is a question I cannot answer. I don’t think he would be inclined, simply because he doesn’t wish to discuss personal issues very frequently. Jack might surprise me, of course!